“Hey Grandma, do you know what my middle name is?”
“No, what is it?”
“It’s Joan!”
“It is? Really?”
“Yeah, Grandma, I’m named after you!”
“Get outta here! You are pulling my leg.”
“No, its true Grandma, and I just went for a four day hiking trip in the Alps, cause I have to live up to my namesake, now don’t I?”
“Well, I guess you do, don’t you.”
My name is Martha Joan. An old lady name, I know. In the West, we don’t put much weight in names–in any power that they might hold. Naming a child after someone is a sign of respect and little more. I am named after my grandma, Joan. I didn’t give much thought to my middle name until recently. Not until my grandma got dementia.
—
Growing up, I always wanted a soft grandma. A sweet, sit-on-her-lap, tell- you-stories, and give-you-candy kind of grandma. That is not what I got in Grandma Joan. She was all angles and sharp edges– in personality and body. My earliest memories are spending holidays in her big old Victorian house in Syracuse. All the aunts, uncles, cousins, and great-grandparents all piled into the house. The adults huddled around the fireplace telling stories while the old clock tick-tocked the time away above the mantel. The kids running up and down the stairs, exploring all the nooks and crannies until Grandma Joan would bark out in impatience, “Can you all just quiet the hell down?!”
At that point we would meekly head off to the den to settle down and watch TV surrounded by faded but cozy 70’s décor.
That was Grandma. Sharp and harsh. Even her laugh was coarse from decades of chain smoking.
When I was still quite young, Grandma Joan nearly died of a heart attack and had to have a triple-bypass. The story goes that she was laying on the operating table shouting at the medical staff, “You idiots better get your shit together or I’m going to die!”
Grandma Joan was a force to be reckoned with.
She never smoked again and, shortly thereafter, sold her comfortable house in Syracuse and traveled the world. Honduras, Japan, Italy, Germany, Ireland, Canada, and all over the US. She bought a house out in Montana, near Yellowstone National Park. She worked housekeeping at beautiful Lake Hotel in the park. In her free time, she hiked. She climbed mountains, snowshoed, and and swam in the hot springs. She volunteered at the local food pantry and everyone in town knew her. Every year for her birthday, she would go white water rafting.
What I realize now, is Grandma Joan is strong. And sometimes that strength looked harsh and boney and even a little scary. But beneath it all, was deep, deep strength. And it is still there.
—
The rumors had been going around for a while– Grandma is forgetting things. Grandma got lost. Grandma didn’t seem to know who I was. But we all pushed those rumors aside. It was Grandma Joan. She is so strong. So independent. How could that change?
It was early spring when my mom told me that she was canceling her plans to come visit me in Germany. Grandma was having a hard time and Mom bought tickets to fly out to Montana that week. When she got there, it was worse than any of us had imagined. Mom didn’t buy a return ticket. Grandma couldn’t be left alone.
—
I remember seeing friends or acquaintances post about their family members with dementia. I remember the visceral feeling in my stomach– fear? disgust? It sounds horrible, but it made me feel queasy. The idea of having to continue trying to have a relationship with someone who doesn’t know who you are. Who doesn’t remember what happened five minutes ago. How could it be worth it? I would briefly wonder how they could do it. And then I would quickly scroll past and put the thought out of my mind.
When I heard that word–dementia–I felt that same pit in my stomach. But I was far away. Grandma was far away. I didn’t need to look dementia in the face. I didn’t have to look her in the face. So I scrolled past it in my mind. Moved on to what was in front of me.
—
My mom stayed in Montana with Grandma as long as she could, taking care of her in her own home–which Grandma did not always love. “When are you going home? Can I drive you to the airport?”
“Oh, I’m staying a few more days, then I’ll be out of your hair.”
This continued for months.
Much of their time was beautiful though. In the beginning, they went for walks in the park. Then, just drives. Walks around town. Bingo nights. Volunteering at the food pantry. Spending time with friends. There were a lot of good times. But slowly, the disease took more and more. And Grandma slowed.
Eventually, the horrible decision of taking her away from her beloved home had to be made. Back to New York. No more car. No more house. No more independence.
By the time I was able to fly home for a visit, Grandma and Mom were settled back in NY. And the disease had stolen even more from Grandma. She was having trouble walking now. Mom was trying to convince her to use a walker. But she would push it away and say, “I don’t need that thing. I can do it myself, dammit!”
I was nervous to see her. What would I say? Would she know who I am? I knew she wouldn’t. She didn’t even know that my mom, the woman taking care of her all day, every day, was her own daughter.
—
She was sitting there, on the couch, the cat curled up next to her, just watching the TV.
“Hi, Grandma.”
“Oh, hi there. How are you?”
“I’m good Grandma, how are you?”
“Oh, I’m alright I guess.”
“Ok…that’s good.”
I felt so awkward. So unsure. She was so quiet. So small. I never realized how small she was before. Growing up, she had always seemed so strong and fierce. I never realized she was actually a tiny little woman.
—
I am sitting at the kitchen table when I hear some shuffling coming from the hallway–I look up to see Grandma, her pajamas hanging loosely from her tiny frame, bracing herself against the door frame.
“Where’s Margaret?”
“Oh, she just ran out for a few minutes, she’ll be right back.”
“Oh. Ok.”
She just stands there. And we look at each other in silence.
“Can I get you something? Are you hungry?”
“Well, I guess I could eat.”
She shrugs and shuffles to the table. I get her a muffin Mom baked fresh this morning. She starts to break it apart and nibble at the pieces.
“Here, kitty-kitty.” She says in a sweet little voice to the cat by her chair as she feeds him a few crumbs. I smile, noting her softness and vulnerability with animals that she most certainly doesn’t let show for humans.
I decide I should try to make conversation.
“Hey Grandma, did you know I live in Germany?”
“What? No, I didn’t. You like it over there?”
“I do, I love it.”
“Well, that’s good. It is good to get out. You gotta travel.”
There is a light on her face I hadn’t seen before. Mom walks in during our conversation, 20 or 30 minutes later, we are still chatting away about Europe.
“Grandma, have you ever been to Europe?”
“Oh, well, I think so…I’m not sure.”
“Well, you’ve traveled all over. Its hard to keep track!”
I tell her about my adventures. Hiking. Exploring. My plans to go for free grad school over there. She tells me that is a great idea. She is happy for me. I finally run out of things to tell her. She listens, but she can’t remember much to tell me, so it is largely a one-sided conversation. As I get quiet, the light fades and she gets up and shuffles back to the couch. Mom says, “That was so good. She hasn’t talked like that in ages. She really liked talking to you.” The pit in my stomach has melted a bit. I’m still scared, but a warmth has softened it. Makes it more bearable.
—
The years passed. One, two, three. Almost four years. And little by little, the disease eats away at everything she has left.
I come home again. She is in a hospital bed now. She rarely gets up. My husband and I hoist her up and put her in a wheelchair. We are going to take her to the Yellow Deli, a rustic local café–her favorite place.
We all know this is probably the last time. We are pushing it, as it is.
“Don’t drop me!” She scolds good-naturedly, as she clings to my husband’s arm.
“I won’t, Grandma.”
Later, she lays in bed and Mom and I sit nearby looking at old pictures. Grandma peers at us from the bed. I can see she is curious. I move closer and hold the pictures so she can see. She is confused. She thinks her mother is herself, or her brother is her father. But still, she likes to look at them. They stir something, deep inside her. Something that doesn’t need words or names.
I notice a gorgeous old rocking chair in the corner. “Hey Mom, where did you get that rocking chair?”
“That belonged to my grandmother O’Mara.” The small, gruff voice states confidently from the bed before my mom can answer. I look at her in surprise. Some things, she has buried so deep in her heart, the disease can never take them away.
I’ve learned a lot about this disease in the last few years. It takes so much. And watching it strip my fierce grandma down to a frail and helpless old woman is heart wrenching. But in spite of that, so much is still there. So much that she holds onto in spite of the disease. Her sharp, sarcastic sense of humor, her fierce sense of independence, her strong will, and her tender heart beneath that prickly exterior.
—
Its evening, I’m in the kitchen with my sisters. We are talking and laughing. Getting a bit louder.
“Will you all just shut up so I can hear the damn TV??”
That gravelly, sharp voice snapping at us, it used to scare me. Now I smile and we giggle and talk in hushed tones.
She is so sweet and calm most of the time now. When that gruffness comes out, I can’t help but relish in it. That is the strong, independent woman who took hold of her life and lived it HER way. That is the Grandma Joan I am named after.
Does a name have power? I don’t know. But I know that I want to be like her. And every time I climb a mountain, I am going to remember Grandma Joan and know that nothing would make her happier or light up her face like knowing I am walking in her footsteps.
—
“I love you, Grandma.” I lean over her hospital bed and wrap her tiny boney shoulders in my arms.
“I love you, too.” The gruff little woman says.
“Goodbye, Grandma.”
“Goodbye.”
Snapshots of a Traveler's Life 